colon cancer

lhsteer
lhsteer Member Posts: 28
edited March 2014 in Colorectal Cancer #1
Hi, I am new here I was diagnosed in 5/04 colon cancer IV. Since then I have had 2 operations one for blockage had ilostomy and mucus fistula bag, then the full treatment of full fox, oxiplatinam and lukeavaroim, avastin, for 6 mos, another surgery to hook colon back up at the time they were going to take spots off liver but found spots on stomache lining so just did hook up now back on treatment again, for6-8 sessions, what I don't like is they say well you may make it 5 yrs has anyone known anyone who has survived more than 5 yrs on anything. my tumors did shrink on liver and hopefully will continue to shrink with chemo. It is the fact of fighting so hard and to keep going to have them say well only 5 yrs at the most. Any help from anyone. or just to give me some advice as what to do to keep on living and fighting this disease.

Comments

  • HowardJ
    HowardJ Member Posts: 474
    Welcome--You've found the right place. Folks here have tons of experience and are very understanding. I am stage 2 and only needed surgery so I'll let the others respond to the chemo questions. They've been through it all and will tell you not to give up hope.

    Howard
  • kerry
    kerry Member Posts: 1,313 Member
    Hi and welcome to the semi-colons. I was diagnosed 2 yrs ago, stage 3 and just had a recurrance this past October 04. I've been through one 6 month session of treatment and now am on my second session. Never give up. There are lots of Stage IV folks here who are still NED (no evidence of disease) following treatment, surgery, etc. New drugs are coming down the pipelines yearly and as long as you are responding, stay the course. There are a few here who also choose alternative methods of fighting this disease and have had wonderful luck.

    Take care, we'll hold you up in our prayers and please let us know how we can help you.

    Kerry
  • Rondog
    Rondog Member Posts: 26
    I was diagnosed in April 04' Stage IV, had a colon resection, removal of 3 lymph nodes and am on my 3rd regimen of chemo...Nobody ever told me 5 years, but I have read the stats and still say ****! For starters, I think half the battle is mental, always stay strong and positive, people beat the odds every day and there are always stories, there is no explaniation for...You and I are going to be in that category..Period...When he told you 5 years, you should have told him to go F himself...

    Secondly, do everything you can for yourself...Personally, I switched to an organic diet, get accupuncture (which really helps) take herbs, including chinese herbs that are custom made, I see a shrink, I have done visualization and am now reading a great book, Beating Cancer with Nutrition by Patrick Quilllin....Just getting started, but I believe it will only help.

    The truth of the matter is, whats going to happen is going to happen, its in god's hands, but that being said, I dont want to go yet, I just turned 37, and I'm going to do everything in my power to get myself better and not rely on the Oncologist alone...I asked them the other day, Cancer feeds on sugar right, thats why with the PET Scan they shoot you full of glucose that goes straight to the cancer cells...they agree, I then ask why does the volunteer person go around to everyone getting chemo with candy and other crap full of sugar...I got some half assed answer about how we knock you down with the chemo we want you to eat whatever you want...Doesnt make alot of sense to me...I think it would be radical to just try and better myself without the chemo, but why not do everything in your power do feed your body healthy nutritious foods and try and starve those cancer cells of what they want...

    Dont get me wrong, my mind gets the better of me sometimes and I get scared, but a positive attitude brings positive results!

    Email me if you want to chat or want anymore insight I can pass along.
  • rejoyous
    rejoyous Member Posts: 259
    Welcome! It's really good that you came here. There's a lot of supportive, well-informed, strong and courageous fighters on this site, many of whom are stage IV. (I'm a III myself, but we all know that can change...) I believe that being in the company of other positive-minded people can really play a helpful role in keeping us all focused on healing.

    As I understand it, the significance of "five years" is that it is considered a cure. Yes, there are stage IV people who make it past five years. (I'm always recommending Lance Armstrong's autobiography, It's Not about the Bike, as an inspirational beating-the-odds story.) Also, the statistics are always out of date, because as someone else pointed out, there are always new drugs coming through that can produce better results. In that context, buying time is really significant.

    Meanwhile, the best advice I've followed is to try to enjoy the moments we have right here and now to the fullest. I know it sounds trite, but what's the point of having a longer life if we aren't enjoying life as we live it? I'm in chemo now and have had so many wonderful moments even in the midst of this grueling period. Daffodils are cheap and in the stores right now. Their yellow is so amazing! Slow down and enjoy what gives you pleasure.
  • andreae
    andreae Member Posts: 236
    Hi,

    So sorry about the diagnosis and disappointing news. You must be frustrated and scared but you have come to the right place. I am also Stage IV. I was diagnosed in January 03 at 20 with Stage III rectal cancer. Had chemo/radiation, surgery and then more chemo. A CT scan immediately detected lots of lung nodules. Since then, I have done FOLFOX, FOLFIRI, two chest surgeries and I'm now doing gemcitabine/Xeloda. Unfortunately, some tumors remain despite the attempts at resection. Although it is frustrating that I am fighting so hard and some cancer is still left, I realize that Stage IV cancer is often a marathon and not a race. There are great drugs out there (I haven't dipped into the monoclonal antibodies like Avastin and Erbitux yet) that can keep us going for a very long time. My motto is that I can live with cancer, just keep me alive. And I have made sure to continue to live on treatment. I am graduating from McGill this summer, I am planning to go to graduate school, I spend quality time with my friends and families... All these things remind me what I'm fighting for. While it is important to fight the beast, you must fight it on your own terms. I believe quality of life is very important because it's the good times that will keep you going.

    You have been through so much since your diagnosis... I imagine your still trying to digest some of this. There are great people here to answer questions or lend a shoulder. On this board, we do not believe in expiry dates. NO ONE KNOWS, especially given the new drugs in the pipeline. I wish you wellness and happiness and hope to hear from you soon. Have a happy Thursday!

    Hugs,
    Andrea
  • HisJoy
    HisJoy Member Posts: 113
    HI! I'm new to this experience, as well, having been diagnosed with colon cancer 1/11/05. I had right hemicolectomy on 1/13/05 and will start a regimen of FOLFOX chemo on 2/15/05. My question to people who might know about these things is this: How many of you have signet cell adenocarcinoma? I understand the histiology on this type is that it is "poorly differentiated" and so is very aggressive and moves quickly. I'm wondering what kind of success rate with this particular kind - I'm stage 3B. Any ideas?
  • Rondog
    Rondog Member Posts: 26
    HisJoy said:

    HI! I'm new to this experience, as well, having been diagnosed with colon cancer 1/11/05. I had right hemicolectomy on 1/13/05 and will start a regimen of FOLFOX chemo on 2/15/05. My question to people who might know about these things is this: How many of you have signet cell adenocarcinoma? I understand the histiology on this type is that it is "poorly differentiated" and so is very aggressive and moves quickly. I'm wondering what kind of success rate with this particular kind - I'm stage 3B. Any ideas?

    I have, Stage IV adenocarcinoma and I remember reading " poorly differentiated " in the pathology reports, other than that, I remember being told it is very, very aggresive, but my first round of chemo was FOLFOX and it got rid of 95% of the crap that spread to my liver..., then its grew and I'm fighting the ****....the worse thing I can tell you about the FOLFOX was that No exposure to cold, no drink, no eat, no touch, not even in the fridge for 5 days and it tightened up my chest, I thought I was having a heart attack, but sipping warm water helped this...Good luck!
  • slammer
    slammer Member Posts: 120
    Hi, Welcome! I am just like Kerry, Stage IV, re-occurance of colon ca, @ 44ys, also doing 2nd round of chemo, with FOLFOX, good meds are out there: Avastin is one I am hoping to help us semi-colons, Chemo can be rough but it does it's thing to kill the bad too. So far my side effects aren't too bad, I could tell you more later, or any of us,but the strength, & attitude is a must & by God we will beat this, Think Positive like others sais there are alot of us in here to help anyway we can, this is a wonderful sounding board & learning place alao. Keep up the faith & Live Strong! God Bless, Don't be afraid to ask anything.
    Amy
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    Rondog said:

    I was diagnosed in April 04' Stage IV, had a colon resection, removal of 3 lymph nodes and am on my 3rd regimen of chemo...Nobody ever told me 5 years, but I have read the stats and still say ****! For starters, I think half the battle is mental, always stay strong and positive, people beat the odds every day and there are always stories, there is no explaniation for...You and I are going to be in that category..Period...When he told you 5 years, you should have told him to go F himself...

    Secondly, do everything you can for yourself...Personally, I switched to an organic diet, get accupuncture (which really helps) take herbs, including chinese herbs that are custom made, I see a shrink, I have done visualization and am now reading a great book, Beating Cancer with Nutrition by Patrick Quilllin....Just getting started, but I believe it will only help.

    The truth of the matter is, whats going to happen is going to happen, its in god's hands, but that being said, I dont want to go yet, I just turned 37, and I'm going to do everything in my power to get myself better and not rely on the Oncologist alone...I asked them the other day, Cancer feeds on sugar right, thats why with the PET Scan they shoot you full of glucose that goes straight to the cancer cells...they agree, I then ask why does the volunteer person go around to everyone getting chemo with candy and other crap full of sugar...I got some half assed answer about how we knock you down with the chemo we want you to eat whatever you want...Doesnt make alot of sense to me...I think it would be radical to just try and better myself without the chemo, but why not do everything in your power do feed your body healthy nutritious foods and try and starve those cancer cells of what they want...

    Dont get me wrong, my mind gets the better of me sometimes and I get scared, but a positive attitude brings positive results!

    Email me if you want to chat or want anymore insight I can pass along.

    rondog!

    Holy cow they serve the chemo patients candy at their chemo treatments? At the chemo clinic that I went to for a consult with an oncologist they served donuts. I asked them the same question and was given the same kind of response.

    That response was the FINAL reason why I said NO TO CHEMO!!

    They were totally CLUELESS on nutrition. UNBELIEVEABLE!!

    There was no way I could put my life in the hands of the doctor who would knowingly serve a cancer feeding poison (sugar) to people trying to beat their cancer. Did not make ANY sense what so ever! So there was no way I could see the point of doing his chemo. Actually if you read Questioning Chemo by Dr. Ralph Moss you will see that except for leukemia chemo doesn't really extend life according the the data. But it's all they have to offer since they (most) choose to remain ignorant in cancer healing nutrition.

    By the way I sent you an email. Did you get it?

    Colon cancer is caused by diet in 80% of the cases. So WHY OH WHY are colon cancer patients, for the most part, not changing their diets. Why oh why are doctors not telling us to change our diets? Mine didn't. Did yours? Hello--it's COLON cancer. Garbage in, garbage out. (If it can get out since many of us with colon cancer have a history of constipation). Garbage in, tumors grow.

    Geez. Sorry for the diatribe, but I just get SOOO PISSED off at the ignorance of serving cancer patients SUGAR and candy.

    ok emily take a deep breath and go practice your yoga now to calm down.

    peace, emily who needs to go do some downward dogs now.....